I have not read this whole thread since I posted it because I can't handle the drain on my energy from all the negativity. I do know one thing - we all have a common enemy in the UK's stance on ME/CFS - trying to enlighten them or the medical community on ME/CFS is like the battle of David and Goliath. When David is out there trying to mount a fight, it is in all of our best interests to stand behind him, and give him ammunition, not tear him down. I can't understand why we as the patient community can't stand together on the most important things, and then work within our communities to make us stonger on points of disagreement.

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Why would the community do that - when they're having so much fun bashing each other and picking sides?

It might be useful after letters are published to collate the letters (published and unpublished) somewhere so that in the future when people are looking for flaws in the article, they would be collated in one place. Possibly too early to bring this up now as some people might be nervous about releasing their letters. But just thought I'd say it when it was in my head.

If I were a journalist, advocate, politician, or philanthropist thinking about getting involved is the issues surrounding ME/CFS and I read Kim McCleary's pathetic efforts at energizing support for this disease I'd assume that ME/CFS wasn't really all that serious and that it wasn't worth my time, money, or effort to get involved.

And by the way, long before these forums were created, the CAA's budget was in a nose dive and that was more than enough proof that they'd lost the ability to generate interest.

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I agree the efforts are not very energizing to say the least. I would say that the CAA does present CFS as a serious disorder - but not very effectively. They did have one of their best budgets in 2008, though. I imagine 2010 will not be very good. .

It might be useful after letters are published to collate the letters (published and unpublished) somewhere so that in the future when people are looking for flaws in the article, they would be collated in one place. Possibly too early to bring this up now as some people might be nervous about releasing their letters. But just thought I'd say it when it was in my head.

Sometimes I think people need to read more carefully (and I do include myself among people).

It is McCLEARY'S JOB as OUR ADVOCATE to advocate on our behalf. Hello! She is doing that job VERY POORLY, and has been doing it very poorly for a long time. She needs to be called out on it, and that's what we are doing here.

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I very carefully stated that I wasn't suggesting that she couldn't be "called out". I said that doing it so publicly and in the manner demonstrated on this thread is not likely to encourage other people to want to help us.

If I were a journalist, advocate, politician, or philanthropist thinking about getting involved is the issues surrounding ME/CFS and I read Kim McCleary's pathetic efforts at energizing support for this disease I'd assume that ME/CFS wasn't really all that serious and that it wasn't worth my time, money, or effort to get involved.

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I didn't (and don't) argue this point, either. So if we don't think Ms McCleary is representing us properly , like it or not, it becomes our job to represent ourselves, at least until we get the situation changed. Are we representing ourselves well? If we want somebody to replace Ms McCleary, are we at all concerned about how the best candidates are going to perceive how we treat our current advocate? Do they need to wonder if they don't do things exactly the way we want that they will be publicly trashed by the patient population?

If you were a journalist, politician or experienced philanthropist, chances are, you would have seen such politics before!

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Yes, and most of them would run like mad. Very many of them don't like getting involved in internal strife.

Bottom line: Vince Lombardi had something relevant to say about this.

"Praise in public, criticize in private."

BTW, this is more about making the boss (the patient population) more successful than it is about protecting the feelings of the employee (Ms McCleary).

There are very strict rules re responding to articles in the Lancet. The deadline was 14 days after on-line publication. March 4th. Ooops Kim.

There are many points in the PACE study (1) that require criticism. I cannot post the letter I submitted, in case it jeopardizes publication, but one key point was that they changed the outcome measures from the ones stated in the study design (2).

They decided, mid-study, to reduce the SF36 score (3) designated as "recovery" from 75 to 60. An SF36 score of 60 is normative for 75 - 84 year olds. The average age of study participants was 38. Even more damning, the entry criteria included an SF36 score of 65 or lower.

Actometers were purchased, and used to assess patients at the start of the study. They were not used to measure outcomes, which rings big alarm bells with many. Instead, the subjective blunt instrument of the Chalder Fatigue Scale (4) was used, and the subjective 'improvements' so measured equate to 6 - 7 points on that 33 point scale. Hardly a world beating result

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The letter was dated March 4th. Hopefully it was received before the deadline, London time. (sounds like procrastination to me)

Those are two very interesting, and damning, points of which I was not aware!

Wouldn't it be fun to do a journal article titled "PACE study an Absolute Fraud" like BMJ did for the Wakefield study? We could generate our own media circus like BMJ did and get White and Sharpe run out of medicine. A boy can dream... Anyway, I'm going to put that idea up on the 'shocking truth' document thread. Let me know if you're interested in doing this.

Agree.
But if Garcia, and any similarly minded critics, think it is that easy to write a good letter, with just 250 words and 5 references, that covers all the important points and will be accepted by a journal, and do it in no more than two weeks...

Well, please feel free to show us how it is done.

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I've been the subject of this type of critique on PR and it's ugly. It's the equivalent of being told by a civilian that they're tired too and why don't you just drink more coffee and go to work. Except it's a lot worse because you know very well we can't do McCleary's job, because we have the same disease you do.

Way too little, way too late. If it takes her this long to write a simple letter she needs to look for another job. I recommend McDonald's.

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Date for submission to the Lancet was 4th March. Requirements for publication include that the response be no more than 250 words. If you want to change attitudes then the target audience of The Lancet is who you need to address, anything else is just shouting at the ether.

Date for submission to the Lancet was 4th March. Requirements for publication include that the response be no more than 250 words. If you want to change attitudes then the target audience of The Lancet is who you need to address, anything else is just shouting at the ether.

IVI

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In which case why not take your own advice and stop "shouting at the ether"?

It's because you're claiming people are ineffectual in anything they do outside your narrow prescription, and Garcia is (understandably) using a 'tu quoque' to you to explain why your argument is not valid.

Over the last few years I have watched the (ME/CFS) community's general opinion of the CAA gradually change from "mediocre, relatively conservative, relatively large status quo organization" to an outright dangerous threat that is dragging its heels, wasting resources, doing too little too late, and desperately needs to advocate for the community it supposedly represents or get the hell out of the way. I have also observed that the community on the internet has evolved from being largely disorganized and disillusioned into a focused and determined collection of groups who are mad as hell and aren't going to take it anymore. It may be crunch time for the CAA, beware of the trend, a "revolt" is on the horizon.

I agree the efforts are not very energizing to say the least. I would say that the CAA does present CFS as a serious disorder - but not very effectively.

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So what's the difference? I'm an advocate and I can't energize anyone vs. I'm skeptical and I don't do anything.

You might be willing to settle for ineffective at $175K a year. I say she's had plenty of time to figure this out and if she hasn't done so by now she never will, no matter how much you might find her personally appealing and a hard but ineffective worker. We need an effective leader, not just a worker, in her position.

Over the last few years I have watched the (ME/CFS) community's general opinion of the CAA gradually change from "mediocre, relatively conservative, relatively large status quo organization" to an outright dangerous threat that is dragging its heels, wasting resources, doing too little too late, and desperately needs to advocate for the community it supposedly represents or get the hell out of the way. I have also observed that the community on the internet has evolved from being largely disorganized and disillusioned into a focused and determined collection of groups who are mad as hell and aren't going to take it anymore. It may be crunch time for the CAA, beware of the trend, a "revolt" is on the horizon.

You might be willing to settle for ineffective at $175K a year. I say she's had plenty of time to figure this out and if she hasn't done so by now she never will, no matter how much you might find her personally appealing and a hard but ineffective worker. We need an effective leader, not just a worker, in her position.

It's because you're claiming people are ineffectual in anything they do outside your narrow prescription, and Garcia is (understandably) using a 'tu quoque' to you to explain why your argument is not valid. Tu quoque is not always a fallacy.

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Say what ? I haven't prescribed anything - the issue is whether 'a letter' is or is not adequate. If the objective is to change attitudes in the medical/research establishment, then addressing that establishment in its own terms is the only way to effect that change, unless of course one has the prospect of exercising some unique power. If the argument of inadequacy is being applied to showhow Mcleary is overpaid/failing, then the argument itself is a fail.

Tu quoque you. By acknowledging my existence as a poster he actually disproved his own point - rather than leaving me 'shouting at the ether', Garcia demonstrated that I had been 'heard' - nice irony, been really funny if he had acknolwedged it himself. Of course I will not have changed his attitude, but then that wasn't my expectation. I'm not acting for an organisation and I'm not trying to change institutional attitudes, just giving an additional strand to the spectrum of online opinion, with which a small number of readers may actually find agreement, or at least interest. But all internet writing is propelled by the vanity that someone will actually be interested - it's the condition of homo sapieniens sub species internetia.

Say what ? I haven't prescribed anything - the issue is whether 'a letter' is or is not adequate. If the objective is to change attitudes in the medical/research establishment, then addressing that establishment in its own terms is the only way to effect that change, unless of course one has the prospect of exercising some unique power. If the argument of inadequacy is being applied to showhow Mcleary is overpaid/failing, then the argument itself is a fail.

Tu quoque you. By acknowledging my existence as a poster he actually disproved his own point - rather than leaving me 'shouting at the ether', Garcia demonstrated that I had been 'heard' - nice irony, been really funny if he had acknolwedged it himself. Of course I will not have changed his attitude, but then that wasn't my expectation. I'm not acting for an organisation and I'm not trying to change institutional attitudes, just giving an additional strand to the spectrum of online opinion, with which a small number of readers may actually find agreement, or at least interest. But all internet writing is propelled by the vanity that someone will actually be interested - it's the condition of homo sapieniens sub species internetia.

IVI

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You said 'anything else is shouting at the ether' apart from a narrow prescription of 'persuading' Lancet readers. By definition that means your own posting. Garcia was showing you this, in quite a funny way too.

So how is it 'tu quoque' me? Or are you actually using this fallaciously (as in children's common refrain "I know you are")?

Also- your pronouncement "internet writing is propelled by the vanity that someone will actually be interested - it's the condition of homo sapieniens sub species internetia", grand as it sounds with your creative use of Latin in there- is not correct. It's not some universal vanity that drives people to engage in these forums. People use them to bounce ideas off each other, discuss issues, in order to - well - save their lives, protect themselves from psychogenic dismissal, mobilise to prevent or mitigate the continuing, striking institutional abuse they suffer (as just a few reasons): and some of us are supporting them in that. Your term vanity is a gross - and inaccurate - generalisation, even if used in a metaphorical sense.

You are writing, in this forum and on your blog (that might be vanity for all I know - or just a specific, strategic attempt to make attack on the community's efforts- we've had enough of those before!) in a way that appears highly contemptuous of people's advocacy efforts and opinions, and you have some odd ideas as to their motives (living vicariously, abusive power over children, vanity, cult-like thinking). That's your right- but people will find that objectionable, so will object.